Setting the stage

I was just reading an article in the news about Multiple Myeloma. It caught my eye because it said that 50% of those afflicted perished every year. It caused me to do a double-take. Reading the article, I actually had to laugh as they explained their statistic. They said that 20,000 new cases of the cancer are diagnosed each year, and that 10,000 people die from Multiple Myeloma each year. It does sound like half of those diagnosed pass away, but it simply isn’t so. The numbers are correct, they just don’t apply to the same 20,000 diagnosed. The facts are that people tend to live from three to five years from the time they present the Durie-Salmon Stage III attributes. I make it a point to specify the staging used because the Durie-Salmon method is slowly being replaced by a newer staging criteria known as the International Staging System. Actually, people can live more than a decade from the time the cancer first begins to offer symptoms, but keep in mind as well that there is no fixed time period involved. There are different manifestations of Multiple Myeloma and different people react to it differently as well.

While the number is reducing, physicians have used staging to draw a prognosis for their patients. Actually, staging has very little to do with how long a victim has to live. It’s more of a guide for how aggressive treatment should be, and whether or not treatment indicated. Sometimes leaving well enough alone is better for the patient as treatment can cause the disease to become more aggressive, and even if it doesn’t, treatment entails side effects that can completely destroy the quality of a patient’s life.

How a patient tolerates treatment is another factor in overall survival. Some of the Multiple Myeloma deaths are actually death resulting from the effects of treatment or result from the reduction of immune system protections.There are different stages of treatment: watchful waiting (as usually applied in MGUS cases) or low grade “smoldering” cases, chemotherapy, radiation, and stem cell transplants. Different chemo agents manifest different approaches to slowing or eliminating cell growth, and each have different response characteristics –and different side effect manifestations and intensities. Radiation is likely the most benign of treatments in terms of side effects, but then it works by killing the cells of both the infected marrow and the bone material itself. A stem cell transplant is an all out effort that uses radiation to wipe out virtually all cells in the marrow and replace them with unaffected cells. SCTs have a very good rate of success, but they also pose a huge risk because they leave the patient, for a time, with no immunity. SCT patients never fully regain their immune system functionality, but more than enough to lead a fairly normal life. Understand that along the way, the weakening of the body in times of treatment also poses risks which are, at time, lethal.

So what’s the truth? We know that the newspaper article which spawned these comments on my part is wrong. Fortunately. That’s a pretty grim prospect they describe. I would say that those who have reached the D-S Stage III level might be looking forward to seven years or more. Depending, of course, on how well their treatment was tailored to their needs and whether or not a secondary cancer or other issue was raised in that treatment. Deep Vein Thrombosis (blood clots) and embolisms aside. So the answer has to be a clear,head held high declaration of “I don’t know.” But history suggests, especially with an improving choice of therapies and symptom clinics, that the idea of three to five years is depressingly conservative. It sure as heck isn’t 50%.

At the time I was diagnosed in 2008, there was a one-third chance I might take no treatment benefit and die in three to five years. There was also the possibility that I might show a partial response to therapy and extend that to eight to ten years. Last, I might have achieved a remission and looked forward more than a decade of living, and with a decent quality of life. If one wants to apply a standard deviation seeking bell curve, we have a 33% chance of dying in the 3 to 5 year period. Surviving that lapse, we can milk that to a 45% chance of perishing in 6 – 8, and beyond, no one knows for sure. Myeloma tends to stage more highly in the elderly who live to a reasonably standard age.

My point is, no one can provide an accurate expiration date to us. Like the numbers bandied in political contests, the numbers are often specious constructs of straw dogs. The best way to respect them is to ignore them.